Vocational Readiness Zoom

On Thursday the 17th of September, Your Rheum hosted another virtual meeting! This meeting was centred around discussing “the vocational readiness of young people with a long term health condition”. The turn-out was great, we had 3 researchers and 9 young people attend from all over the UK! It was fantastic to hear the thoughts of the young people regarding the things that helped/didn’t help during school, college, university and work. In addition to this, the young people were able to point out areas where things could improved and where extra attention is needed. If you were unable to attend the meeting and have any point that you would like to address, regarding your own experience with a long term health condition, then please email: your.rheum@manchester.ac.uk

For anyone who did attend the meeting, please could you email me with your details so that I am able to send over the vouchers!!

Potential Your Rheum Video

We have recently discovered some extra money in the budget and we were thinking about potentially making 2 videos about Your Rheum. The first would be one on how to get more young people involved in Your Rheum. The second video would be a more general research one. Originally, we had hoped to be able to do some filming however due to lockdown, we feel that an animation-style video would be best. We are still in the planning phase, as we are still calculating costs! Would you be interested in taking part? Have you got any experience in animation/graphics? If so, please email: your.rheum@manchester.ac.uk 

We would greatly appreciate any help!!

Upcoming meeting: 17/09/2020

We are happy to announce that our next virtual meeting will be held on the 17th of September at 7pm via Zoom. In the meeting, the discussion will focus on a research proposal looking at vocational readiness of young people with long term health conditions. If you would be interested in joining, please email your.rheum@manchester.ac.uk for a Zoom invite to the meeting. Your views and opinions will be greatly appreciated and you will be compensated for your time!!

A Second Superb Your Rheum Zoom (Meeting)!

On the 30th of July, we hosted our second virtual meeting via zoom, which turned out to be a great success!

We had 2 researchers join us to discuss two of their projects. The first was centred on the study of the small blood vessels at the bottom of your nails (Nail fold capillary) in children and young people with a rare rheumatic condition affecting the skin and muscle called Juvenile dermatomyositis JDM. If you have any additional thoughts that you would like to share with the researchers, please contact: liza.mccann@alderhey.nhs.uk.

The second project was focused on the Health Outcomes, Peers, family and friEnds (HOPE) study: Harnessing the benefits of social support for adolescents and young adults with long-term health conditions. Once again, if you have any additional thoughts or opinions that you would like to share, please contact: a.farre@dundee.ac.uk.

The number of Your Rheum members present was very encouraging and it was fabulous to see so many of you getting so involved and being so enthusiastic regarding the projects. We look forward to our next one!

We are hoping to host our next meeting in early September, so if you would like to join us for it, please email: your.rheum@manchester.ac.uk and we would really appreciate it if you could please post your availability on this doodle poll: https://doodle.com/poll/mu85dvtyf3di8nfg

Have you had your normal face-to-face rheumatology appointment changed to a phone call or video consultation due to the COVID-19 pandemic? We would like to hear from you.

These are strange times we are living through and one change you are likely to notice is that you will be seen less often in the rheumatology clinic and instead either have your appointment by phone or in a video consultation. We would like to hear your opinion about this change to your care as this may be an area for future research.  Is the opinion of young people different from that of their parents? We need to find out.  So let us know what you think by emailing us at your.rheum@manchester.ac.uk and we can feed your opinion/ideas into the discussions and ensure your voice is heard! Be sure and let Frances know if you wish to remain anonymous or not when you email us.

If you are interested in writing a short piece about your experience for the next newsletter or a blog on the website, even better – just let Frances know.

Upcoming Zoom Meeting

On the 30th of July, Your Rheum will be hosting our second online “face to face” meeting via zoom! The session will run from 7:00pm until around 8:15pm. We have two researchers who are looking for young people’s insight into forming research projects, so your opinion would be greatly appreciated!!

Please let us know if you will be attending by emailing us at your.rheum@manchester.ac.uk, just so that we have an idea on numbers and we will email a zoom link a little closer to the time.

Interested in research into how health professionals talk with children and young people about pain?

The latest online activity is from a researcher at the University of Manchester – DR Rebecca Lee who has requested your help in writing a list of question prompts to use in future interviews with children, young people and their parents in her study considering the communication about pain between professionals and young people and their families. All you need is to download the document, have a read and a think and send Rebecca back your comments – anything missing, another way of saying something, anything you don’t understand etc. If you would be interested in taking part, please see here! You will even got a shopping voucher to say thank you for your time – for when the shops eventually open!

What are your priorities for future research in rheumatology?

A key aim of Your Rheum is to ensure the voice of young people is heard at all stages of the research cycle, right from the decision making as to what research to do, right through to sharing and publicising the results . The national group which steers research within the paediatric and adolescent community in the UK – the Paediatric Rheumatology Clinical Studies Group – has set up a survey which we would encourage young people to complete so they hear what sort of topics YOU as young people want researched. What are the questions you want answered? So please, take a few minutes and ensure your voice is loud and clear and heard: https://www.surveymonkey.co.uk/r/NTD2X2J

Your Rheum’s First Zoom Meeting

On Friday the 29th of May, Your Rheum hosted its first online meeting via zoom. All in all it was a great success and we had over 12 participants from all over the UK!

We decided to organise this meeting, so that we could still engage young people in research and listen to their views/opinions whilst on lockdown. We talked through the current and upcoming opportunities available through Your Rheum and a bunch of external activities that young people may find useful.

One of the research team also joined us, to go into detail about their project and how exactly people could feed into developing the work.

We are currently working on trying to organize another meeting and as soon as we have decided on a date/time, an email will be sent round to members, the website will be updated and a Facebook group post will be added! If you would be interested in taking part in the next meeting, you can also email: your.rheum@manchester.ac.uk